Tuesday, May 26, 2015

This Memorial Day weekend was very different from those of the past. It didn't start out that way! It seemed like it would be uneventful. Saturday was spent mostly indoors watching movies, Sunday was the opposite. Kerstin wanted to show me that she is the boss in these parts and I jokingly said that she was fussing at me about something throughout the day. I was in and out of the house because I was working in the yard, trying to be a gardener! Sunday night took a sudden turn! I was sitting in one room finishing up an assignment for class when I heard Kerstin making a light moaning sound. I ran in to check on her, only to find that she was not alert and had that look as if she was looking pass or through me. The left side of face was twitching, then nothing! She seemed okay and alert, only to turn her head and everything started again. This happened over and over. I always keep my cell handy to time her seizures and now to access my new favorite app; SeizAlarm. I found the app last month after Kerstin had a seizure. I couldn't fall asleep after it was over so, I just started reading about seizures and stumbled across a jewel. I wrote about it here. If you or a family member or friend has a seizure disorder, Epilepsy, you should have this as a resource. It works and makes the emergency contacts for you, with a map of where you are!

After, I opened the app, it immediately made the contacts for me, within minutes my sisters were with us. Kerstin had to be given her Diastat because the clusters had gone on over five minutes. So, we wait to see what's next! What happened was scary and not something you get used to. Kerstin went into a full grand mal clonic-tonic seizure with loss of alertness, vomiting, full body jerks! That brand new suction machine we just picked up Friday had to be put to work!

This seizure was relentless! It completely took over my baby's body, her eyes were so red, her body so stiff and uncontrollably jerking. It was only adrenaline that kept me from screaming and crying. More Diastat had to be given. We called Children's Neurology and the on call doctor advised to take her to the ER since they had not stopped after 2 rounds of Diastat. There, they performed urinalysis, blood work, CT scan and chest X-ray, to all come back normal! There was no fever! What caused this? That is a mystery! We will have to follow up with her regular neurologist "ASAP" per the ER doctor. He seemed just as puzzled as I. He said, he just didn't see anything out of the ordinary with the tests they performed. He did order a level to check her Keppra levels. That could be done in the ER and had to be sent to another lab. Memorial Day, we left the ER at 7 a.m. so, needless to say, they remainder of the day would be spent sleeping. That is what we did. For the first time in my 30+ years, I didn't spend this holiday with the family and I did not see my own mom! This seizure activity took a lot out of Kerstin too. She was probably awake for an hour or two at most on Monday. Now, we wait! Wait to see what her neurologist has to say...Definitely more to come...

Sunday, May 3, 2015

Another year, another entry in the National Mobility Awareness Month Hero contest (#NMAM15). An accessible van is no longer a want, it is a need. Kerstin is now 13 and weighs over 80 lbs. herself with a wheelchair that weighs 68.8 lbs. Every stop we make, I am lifting about 150 lbs. not counting her things needed for care and hygiene. Along with Kerstin being a teenager, she likes to be on the go. Kerstin likes going to the movies, to Target, and other outings. When that many stops are factored into one outing, there is some heavy lifting being done. I have never been the mom to keep her sheltered and hidden, she is on the go, out and about as much as possible. Also, Kerstin has a number of doctors and other appointments that she has, they keep us on the go as well. A dear friend submitted the entry this year for the van contest, here's some of what she had to say: "I open my email in Dallas to find new photos from my dear friend Mattisa, and I smile. The pictures let me share her and her 13-year-old daughter Kerstin’s lives in Hayneville, Alabama (pop. 994). Most days, Mattisa and her “Sweetpea” drive their old 2001 van to Montgomery, Selma or Birmingham – 40, 38 and 125 miles each way respectively. They go for school, basic shopping, shows and – most importantly – Kerstin’s doctors, nurses, therapists and surgeons. She was diagnosed with spastic quadriplegic cerebral palsy at 6 months and with hip dysplasia, epilepsy and lung-threatening scoliosis after that. Last year, Kerstin weighed just 40 pounds, necessitating a life-saving, permanent feeding tube. She’s now a normal 80 pounds. Despite her many disabilities, surgeries and ongoing seizures, Kerstin is a sweet, smiling girl. Her first love is, of course, her magical mom who’s always there for her. In my eyes, Mattisa is exactly the hero every mom hopes she’d be if her child were disabled. She knows her little girl will never walk, talk, gesture or care for herself, but the words “complain” and “sympathy” are not in her vocabulary. A single mom, she always keeps Kerstin safely tucked by her side as she works, volunteers (a lot!) and advocates for disabled children. She even completed her Associates’ Degree in Education this year and is moving on to a Bachelor’s Degree in Social Work/Human Services. Not surprisingly, her favorite song is “I’m Invincible.” And yet, I worry. Mattisa’s back and shoulders are deteriorating. Each time the two get into or out of their van, she lifts Kerstin along with her wheelchair and gear (150+ pounds). An average day is 8 stops – or 1,200 pounds of lifting. What’s more, with Kerstin’s delicately fused spine, any jolt could be disastrous. My dream is to see my hero, Mattisa Moorer, win the wheelchair-accessible NMEDA vehicle. It would literally be a life-changing miracle." If you don't mind, please give us a daily vote in the contest. Don't forget to answer the daily question for an extra vote. Thank you so much for the support. You can vote for us here.